Dance with me

Tag: Wife

Sometimes things happen that are beyond your control. Bad things. You can face them, try to deal with them, or you can hide in denial.

My wife, Anne, has a number of illnesses and has been finding things increasingly difficult since the end of last year. We haven’t been out socially since New Year. In fact the only times she has left our home since then have been medical appointments.

She has always been strong-willed: that is what has gotten her through this far. Through traumatic events, through heart attacks, through cancer treatment. Through all of that she has kept going. When she suffered necrotizing fasciitis in her spine resulting in major surgery and it was not certain if she would ever walk again she never gave up, pushed herself and regained her mobility.

But there are limits. She saw her doctor earlier this week, and he was in tears as he told her that, basically, there was nothing that could be done beyond adjustments to her medications. She has emphysema and cancer, either of which can be fatal. But it is her heart that is the weakest link. It is most unlikely that she will see me complete my gender transition to fully become the person I am inside.

She who has always handled fear face-on, fighting with all her strength, has little strength left. She is truly afraid, not of dying, but of losing what independence she has. She copes with her pain very well, rarely becoming angry or upset. She hates to be an object of pity and hates to think that she will have to rely on others, primarily me, to care for her when she is unable to care for herself.

She has become afraid at the thought of going out socially. Afraid that people will show pity or treat her differently. That they will see that she looks ill.

These past few days since she saw her doctor she has been trying to face the fact that her illnesses are getting the better of her. Her years of denial have come crashing down and she is finding it so hard to accept the stark reality of her situation. To face the overwhelming probability that she will never feel better, that she will deteriorate over time. To face the fact that she is mortal, that the clock is ticking, and that her best days are all behind her.

She draws strength from her faith — she is Catholic — and that is a great comfort to her. She also finds comfort in my presence. I can’t make her better. I can’t take away the pain or ease her suffering. I can only be here so that she is not alone.

Somebody that my wife, Anne, has known all her life phoned her the other day. She hadn’t spoken to this person for a couple of months and had thought it strange that they had not been in touch for so long.

It turned out that this person had been on the receiving end of some transphobic teasing in public because of his association with me through my wife. Rather than standing up for Anne and me, he found the experience humiliating and took this out on my wife.

I’ll not go into all the details, but she was subjected to a torrent of insults and abuse shouted down the phone by this so-called close friend and ended up very upset and distressed. Being called some of the things — perverted, disgusting, embarrassing, mental — was bad enough, but there was worse which I will not repeat here. I’ll just say that it was a massive slur on her character and definitely slanderous.

All because she continues to love me as a trans woman. So these people think I am an embarrassment because I am making the journey to become my real self? Anne and I are two people who love each other and we can’t see how that affects the lives of these others.

We have a message for the people who don’t like how we are: we don’t want anything to do with you and your intolerance. You are an embarrassment, and your ignorant prejudice has no place in our lives. We choose to associate with people who value and practice tolerance, acceptance, understanding and love. Not those who close their minds and treat anything outside their narrow view of the world with fear, contempt, disgust and hatred.

In the week that a good-looking young man, Tom Daley, Olympic diver, came out as bisexual I have found myself wondering why this even constitutes news. To me it reinforces the impression that even today to differ from the heterosexual norm is still seen by too many people as worthy of comment.

I’m just going to say, before I start properly, that this is going to be a one-sided view of events. There are two sides to every story, as they say, and I’m sure this one is no exception. This is my side:

It has taken me a long time to accept I can’t live independently. All kinds of people manage it. I’m educated, literate, numerate and intelligent — I hate false modesty 😉 — with no physical disabilities. So it ought to be easy, right?

I screwed up again. Nothing new there: it’s a regular occurrence. This time I paid three bills twice, but luckily I’ve got the money in my account to cover it. Finances and me are not a felicitous combination: left to my own devices I will forget to pay bills, lose track of my balance and go overdrawn. Why should this be? I studied math to university level, I was an A student at school and won a Gold Award in a national mathematics competition, I’ve been working as a software developer for most of my adult life: I am completely comfortable with numbers and higher mathematics.

So… it’s not the numerical or arithmetical aspect that gives me trouble. It’s executive function (EF). Or rather executive dysfunction, specifically as it relates to planning and working memory. I’ve tried to manage household finances over the years but I always come unstuck, losing track of what’s paid, what’s due and how much money remains in the account. I’ve tried using written accounts, spreadsheets, internet & mobile banking and still I fail to keep on top of it.

Of course the household budget is not the only area where I suffer these or similar problems, but it is the most serious. I can’t multi-task – I am only able to concentrate on doing one thing at a time, which can be a limitation in the kitchen when I’m trying to toast bread at the same time as frying bacon. I’ve lost count of the number of times it has resulted in burnt toast since I forgot about it being under the grill until I smelled the burning! And at work I have problems with meetings – I sometimes forget about the meeting until after it has finished, or get confused about what day it is scheduled. And this is with a reminder on my PC: without one I am totally at sea.

Grocery shopping is another problem area (even without the associated sensory issues and the severe discomfort caused when they reorganize the shelves, but that’s a whole other subject). I have a routine – no surprise there – where I make a list first, sorted according to the store layout. I pick up the items in list order, and I still miss one or two items as often as not.

It’s a curious, sometimes frustrating state of affairs. I can hold down a full-time job, I can drive, I even run a darts competition in my local pub. But I can’t live independently. There are key areas where I need assistance that center around running a household: finances, laundry, cleaning, maintenance. I know that I have the skills to perform these tasks, which is the most frustrating part. I just lack the organization to do them consistently in a timely manner. I’ve tried, I really have. I’ve lived on my own for periods when I was a student as well as when I first moved away from home permanently to take up a new job. And every time it has been the same end result: things fall apart after only a few weeks.

It’s a benefit of being married that I have somebody else in the home whom I can rely on to do the organizing, to balance the books, and to remind me when jobs need doing. As I said to my wife only this morning, I don’t know what I’d do without her.

I fear I’ve been behaving selfishly recently. I don’t want to make excuses – just try to explain. As I wrote recently, my wife is very ill at the moment and her physical pain, exhaustion and isolation are causing severe depression.

I find that I resonate with how she is feeling. I feel her depression like a deep, black pit; like a hundred hooks in my insides drawing them down into the depths, leaving a void yearning to be filled with anything other than the aching emptiness. I find it very difficult to function in the face of such intense emotion – and I am only feeling it second-hand, picking up the echoes of what my wife is experiencing!

I just don’t know how to handle the situation; these feelings. I don’t know what to do for my wife to help her with her depression. I feel lost. So, selfishly, I have been withdrawing and taking refuge in familiar routines. I’ve been alternately detached and irascible with her instead of being supportive. I know that’s wrong and I want to be supportive – it’s proving to be a big challenge.

My reaction to strong emotions is not at a conscious level – it is sheer gut instinct. Such feelings push the buttons of my primitive fight-or-flight response and my conscious mind has to fight hard against the tide to overcome these basic instincts. It doesn’t always succeed and that is when I overload.

Imagine, if you can, how a pet dog would react to its owners having a row in front of it. The dog can’t understand what is causing the situation but can pick up the emotional overtones and becomes distressed. Perhaps it slinks off, tail between its legs, and cowers in a corner, whining. And over time the dog will become more wary and it will take time and effort to overcome its reluctance to approach, its fear of being in that situation again.

Neurotypical people don’t react like that dog, and so don’t expect that other people would either. But some autistic people don’t have the ability to handle these emotionally-charged situations. We can’t rationalize the causes when we’re experiencing such distress. All we can do is react instinctively. There’s a very good article on this subject on the Autism and Empathy blog.

When I fail to react to somebody in the way that they expect, when I react in a way that appears unfeeling, irrational, selfish – that is often the result of all too much feeling on my part. Feeling – emotion – so strong that I can’t rationally cope with it and my mind regresses to a more primitive mode of operation: instinct, the primitive drive for self-preservation.

My goal with this blog is to offend everyone in the world at least once with my words… so no one has a reason to have a heightened sense of themselves. We are all ignorant, we are all found wanting, we are all bad people sometimes.